Like everyday, today is a new day and how I approach is up to me. As I mentioned in my post yesterday, E had a very important neurology appointment last week, the results of which are still less than concrete, but more focused and ultimately bittersweet. With everything going on in the last week it’s been something I have wanting to write about but have not really had the time or really the grounding to really process how I am feeling. Even as I type this, I am not sure how I feel. Perhaps this inability to process clearly comes from a form of denial or maybe just that it’s not completely concrete or maybe it’s just that I am running so fast that it hasn’t really set in. Considering I had a breakfast meeting this morning with 2 friends/business colleagues whom I have known for a long time and once we had finished our meal at the very lovely London Hotel and I made my way to the office, I realized my shirt was on inside out…then yes, perhaps it is the final element or some combination of all 3. Personally, the shirt inside out made me laugh out loud as it is so purely ridiculous and no matter how graceful I attempt to be, I will never be that person…oh well…we can pause a moment here to allow me to truly embrace this piece of news. Again, all about the lens and I will just refocus this part of my lens to qualify this characteristic about me as charming and not so much clumsy which might be more accurate.

Ok, so now on to E’s diagnosis or rather the thoughts about her condition. As I have said before, without doing an MRI on her brain, which the neurologist will want to do at some point but with E’s respiratory issues she is at greater risk of complications going under anesthesia and that is most definitely something we need to wait on for a whole host of reasons. So without these images of her brain and based on her medical records and observation, this specialist who is very well respected in his field, came to think that E may in fact have Cerebral Palsy (damage to the brain) that does and will affect her coordination. The good news about this is that eventually she will likely be able to do everything that requires coordination, like walking, talking, writing, typing, etc. but it will take her 3 or 4 years and the process to get there will be intense and once she does get there, she will likely continue to be challenged with disabilities, but again, will eventually likely be able to conquer most of them. The other piece of good news is that she is progressing, getting better and improving with therapy. Overall he looked at her and said, “considering everything she has been through, she is doing well” and of that he could not be more accurate, for she is here. So while we sat there elated in some ways to at least have a direction and that it was his belief that she would in fact do the things that we so want her to be able to do, the notion that her road will continue to be challenging and difficult saddened and still does sadden me. She is my most precious baby girl and to think that people may look at her funny or that she will ever feel self-conscious or frustrated about her abilities for things over which she has no control hurts my heart. Of course, in some ways we all experience this. People’s reactions to what affects our lives are not always forgiving or understanding if they have not experienced similar circumstances. Divorce, IVF, etc for me personally were challenging times in that people always seemed to have opinions about my circumstances and how these things affected them, but I am an adult and she is little, small, growing, but strong. Ever so strong. She has more fight in that little body than I have in all of mine. So she will fight, and we will fight along side of her to do whatever she needs. This will be a long road but one of hope and joy for again she is here. The other night as I was recounting this conversation to my mom and dad, they were both relieved and happy to hear the news. As I started down the road of how I was a bit saddened, my mom was so helpful in just reminding me how far she has come and my dad told me the story of a person that was part of my childhood but I don’t remember well. As it turns out, her little girl who is only 8 years old has been battling cancer for the past 18 months. She has fought it off a few different times but it keeps coming back. Most recently it has come back in multiple places in her little body and there is virtually no chance that she will make it beyond the next 6 weeks. As I told them our news about E, it was fascinating the lens through which they each received the information. For my mom it was a relief although she supported me as well in my concern for E’s future and my dad, while he had the similar reaction, was almost celebratory for the relative scenarios of little Faith (the little girl’s name), he could not have been more pleased that E is alive and has a chance. As I listened to the story he told, my heart broke for this family. The tragedy that they have fought so hard to avoid is simply unthinkable and my prayers and I hope yours will go out to this little girl and her family.

Even now as I recount the story, and I reflect on our situation I am still unsure of how things will progress with E, mostly because not too much will change, but what I do know is that there are 3 truly awesome circumstances that played out (outside of my public humiliation of wearing my shirt inside out AND I just realized one of my buttons is open…I mean honestly!) today:

1. I too was reminded to refocus my lens. To be grateful of each little gift and for each moment and that the joy of having E far outweighs the concern over what might be.

2. I have awesome family and friends who will always help remind me that things will get better, but also let me process how I need to, for you cannot know exactly what someone is going through as we are all different but simply acknowledging their emotions goes a long way to help them feel less alone.

3. To know that there are amazing little girls and her family out there like little Faith and her family who fight every day for their children and children like theirs as they become advocates on so many levels for themselves and those around them. These families remind us how very lucky we should consider ourselves each day.

And with that, I will simply take a deep breath, which I hope you will join me, refocus your lens and restate the quote from above as it could not be more perfect “I am not afraid of tomorrow, for I have seen yesterday and I love today.” And I wish you all a lot of love for today. For yourself, your loved ones, and the fact you are here and then for whatever you have left over, send it out as prayers, energy, vibes or whatever you are into, into the universe for heroes like Faith and her family who can use the positive love and energy to wrap around them like a big warm hug and make today and yours anewfavoriteday.

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About Shannon Pruitt from 'Mynewfavoriteday'

Welcome to 'mynewfavoriteday. This space is about gratitude and connecting through being open, vulnerable and real. I hope you will enjoy my take on motivation, inspiration and advocacy and will take the opportunity to tell me of your own thoughts and stories.
Why I started 'mynewfavoriteday.'
I am a childhood surviving, divorced, now happily married, IVF (and now natural pregnancy) success story, working mother of 2 amazing babies who were born 12 weeks premature. As life often seems to surprise you when you least expect it, we added another sweet baby girl M to our family in July of 2013. While our angel minis, Q and E are now 7 years old, our son, Q, has thrived while our daughter, E, has had a much more difficult journey. She is considered special needs and in September of 2012 was diagnosed with a rare genetic disorder called Angelman Syndrome. And so, as she has grown, so do we as individuals and as family. How to help her, how to celebrate our differences while allowing ourselves to cope with the challenges that we never knew to expect. Thus, while much of this blog is based on our experiences (good and not-so-good), it is also based on how we must not let ourselves become victims of our circumstances but rather advocate in our own lives.
A little bit about me and who I am.
In my professional life I am a marketer in the Entertainment Industry; however, ‘mynewfavoriteday,’ was not born of entertainment or marketing but rather as a pathway to help myself and others as we try to define who we are as parents, family members, spouses, friends, colleagues and people. I believe in never judging a book by its cover. Every cover is different, and no matter what your cover looks like, you never know how someone's book is written. Like mine. From the outside, you might never know what truly makes me who I am or what I believe. This blog explores the pages on the inside of my book. My vulnerabilities, fears, happiness, and all my triggers through the lens of being grateful for all the amazing blessings I know I have received but sometimes forget in the challenges of daily life.
Thanks again for dropping by. I hope you will come back, subscribe, comment, share, and/or just hang out and be inspired or motivated to make each day for yourself or someone else 'anewfavoriteday.' By being here, you have certainly helped to make it mine.
xo,
Shannon

Wow Shannon, I think this is your most beautiful and (as others have said) powerful post yet. Your deep love for E and Q shines through in your writing – it’s an honor just to witness it. Thank you for your continuing inspiration.

Thanks so much Laurie. It means a lot to me that you continue to read and go on this journey with us. As you so well know, this emotion they call a Mother’s Love is so pure and powerful it can propel you to do anything. Thanks for your support and sharing your thoughts.

About Me

My name is Shannon Pruitt and I am so grateful you have joined me here at 'mynewfavoriteday.' It is my hope that as you spend time on this blog, you will take the following reminders with you that will make you want to come back, subscribe, comment, and share 'mynewfavoriteday.' 1) Be "present" and recognize moments in your life so that moments don't pass you by and you can truly appreciate all you have in each day. 2) Count your blessings. Be grateful for family, friends, pets, things, a roof over your head, food to eat, your ability to laugh, or walk, or hear, or see. Reminding yourself of these things can be the first step in making each day 'yournewfavoriteday.' 3) Know you are not alone. While our experiences may be different the emotions that we experience whenever we struggle or are challenged are the same for they are the core human emotions of sadness, fear, loneliness, and yet we are all searching for the same emotions as well of hope, love, happiness, joy and peace. At 'mynewfavoriteday' you are never alone and you never know what you might find from my posts or other's comments that just might help you find a little more of those core emotions we all look for. 4) Use your voice. Remember you are your own best advocate and by using your voice you may inspire others or be inspired, so go ahead and speak up. 5) Be grateful. For each breath, for the opportunity to live. Be motivated and inspired that you have the chance to just be.

I hope today and everyday is 'yournewfavoriteday' and I thank you for visiting and sharing your thoughts, stories and inspiring words with me as it helps me beyond words. Sincerely, Shannon